In the past week, grassroots ME/CFS patient projects to boost awareness of the serious need for biomedical research funding really started to gain traction. And though many argue it’s premature, messages about XMRV have been the driving theme. For example:
On November 29, Rivka, a low-budget publicity genius, launched “Protecting the Nation’s Blood Supply. Not!” – a campaign that spurred large numbers of patients to e-mail the American Red Cross, using a ‘playful’ video that asked what the organization was doing to keep XMRV out of the blood supply.
Just 4 days later on Friday, Dec 3, the Red Cross issued a press release stating it is banning ME/CFS patient blood donations.
And within hours, premier press coverage followed in the Wall Street Journal, Washington Post, and financial/business news website Bloomberg.com. For links to all the stories & hundreds of comments, see “Rivka’s Red Cross XMRV e-Mail & Video Campaign Scores a Win!”
On Monday, Dec 6, the ME/CFS Worldwide Patient Alliance's half-page ‘Virus’ ad ran in the Washington Post. The ad – “New HIV-like Virus in the Blood Supply” – represents weeks of work by MCWPA volunteers (http://mcwpa.org).
See “Washington Post Publishes ME/CFS Virus Ad” for more information about the project, and to learn how you can help increase its impact.
But There’s Much More
Within hours more than 20 people had added links to, or suggestions for, other opportunities for involvement.
And for patient activists outside the US, the Worldwide version of the XMRV Awareness Campaign is highlighted in the Youtube video "XMRV (The Retrovirus)" comparing XMRV to HIV and highlighting the potential threat of its spreading via the blood supply.
Referring to the situation in the UK, the video states: "The CFS Community is requesting the Health Minister to provide a blood test for XMRV retrovirus. The Ministry of Health is not responding."
Speaking to activists in the UK and around the world, the video offers: "If you want to sign a petition to request free XMRV testing and awareness public campaign of XMRV related diseases you can do it here":
World Wide – www.PetitionOnline.com/go1315/petition.html
For Spain – www.petitiononline.com/XMRV/ptition.html
For The Netherlands – www.petities.nl/petitie/erkenning-van-en-biomedisch-onderzoek-naar-neuro-immuun-ziekten
So the ripples spread.